About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, September 27, 2009

Hi Everyone! How have you been? I've been really great the last few weeks! I've been enjoying my little angel, Hanz! He just makes me so happy! I think about him all day while I'm @ work - and I play little videos or photos of him I have on my phone! I'm so happy with my little family! You know what bliss is? Getting into my comfy king size bed @ the end of the day, knowing my wonderful husband and very special puppy will be in it! That's the most fun part of our day - getting into bed, Mark has the remote and I have a Twilight book and Hanz is snoring between us!

Ok, so I have a little bit of bad news. Don't know how bad it will get, but yesterday after we got home from running some errands, I was sitting @ the computer eating my favorite snack - candy corn! - when I had a funny taste in my mouth. I ran to the bathroom mirror and opened my mouth to see blood! Awww man! I had been doing SO well w/out any incidents! Right away, the blood coagulated, so it wasn't as if I had blood flowing freely in my mouth as I have had before. So I rinsed out my mouth, and since I can't open my mouth wide right now, it was hard to see where the bleeding was coming from! It was in the area of my upper left back molars! So! The question is - is it the AVM, trying to push through? Is the avm loosening my back molars? Or are my teeth scraping the inside of my cheek back there and causing a bleed? It happened again a couple hours later, 'bout the same thing. I got in my jammies w/my book and Hanz joined me relaxing in bed. A few hours later, it happened again - this time it was a little more blood. I called my sister Celia, to give her a heads up on what was happening.

Celia and her husband Greg asked a couple of very good questions, like: why wasn't I able to open my mouth wider? My ENT, Dr. Zane always said this was caused by the inflamation from past procedures. Celia suggested I ask to have a CT scan done of the area and find out if there is anything that can be done! Course I wonder if maybe doing the Therabite might have triggered this off as well?! No telling!

I also called up to CO, to ask about what I should do @ this point! Got a call back from Eric, the P.A. on call. He suggested I call the receptionist on Monday, Sadie - and get her to start working on getting me an appt. up there w/another ENT that they refer their patients to. I had told Eric how Dr. Reed felt the trache was pretty risky, so Eric wants me to get this second opinion. We really can't move forward on a procedure any time soon, because Dr. Yakes is out of the country until like October 5th!

No telling what is in store for me next - a trache? If so, how long will I have to wait for a procedure? Dr. Reed says 5 weeks for the area to heal. Don't know what this other ENT in CO will say. I just want this nightmare of an AVM to be overwith so I can enjoy my wonderful family! Celia and her husband Greg are so generous! Celia promises that whatever I need, I will have it! They are very supportive, and I hope to have Celia with me if we go to CO soon! I want Mark to stay home w/our baby Hanz - he misses us sooo much when we are gone! My sister-in-law Shelley tells us that Hanz just stares @ the door and sighs when we are gone. Poor baby! I miss him so much when I have to leave! I'm willing to sacrifice taking Mark with me, because I feel Hanz needs him too!

Oh! I almost forgot! We were already in the HEB grocery parking lot near our home today,I looked in the mirror and noticed that a little bump on my lower wound side was just not looking good. I had been looking @ it in the mirror the past day or so, and I had not brought my wound care bag with me, feeling I didn't need it. Well, now I just knew that bump was gonna give me a hard time. Mark asked if I felt we should go home, and I said yes! Soon as we did, I went into the bathroom, looked in the mirror and touched some tissue to that bump, and sure enough! The blood really flowed! It was thick and it didn't look like it would be stopping any time soon! We knew this would happen and Mark got me a folded up, wet paper towel to put pressure on my face with. An hour and a half later ... the bleeding finally stopped!

Well folks, as always all your prayers are very much appreciated by all of us! I couldn't do this without you! I will keep you posted as we all travel this journey together! Thank you all!

Sunday, September 13, 2009

Hi Everyone! How have y'all been? Well, I had gotten away from blogging because I wasn't making any trips to CO and I didn't want to write about just some piddly stuff - but if you insist! Here goes! No, I'm very happy to know that I am so blessed in having a lot of friends that worried and asked for me because I had not written! I did go through a little bit of a slump after I had been in the hospital w/that ear infection and had gotten a transfusion. That set me back on working w/my Therabite system (so I can get my mouth open wider and the anesthesiologist in Denver can intubate me)! For a while it seemed like I just had one set back after the other! My ear had a lot of drainage, so I had been wearing a cotton ball in my ear to absorbe that. One day after work, came home, removed the cotton ball and stuck a q-tip in there to get any remaining drainage. I soon noticed I was bleeding from inside my ear! Ugh! I kept teling Mark to hurry and help and he kept handing me q-tips to catch the blood with and tried to hold the flashlight close so I could see in my ear - frustrating! Then one day @ work right after lunch, I was trying to scrape some dried drainage from my ear canal and accidentally hit a scab that really got the blood flowing! I was in the breakroom @ work, but managed to grab my wound care bag and head to the bathroom, all the while trying to stuff a paper towel in my ear to catch all the blood! (Some of the above was sounding familiar - but it is different than the incident July 15!) Luckily one of the female officers came in the bathroom as I was trying desperately to make sure I didn't get blood on my phone because I was trying to call Mark! Grace really helped and got Mark on the phone and he came to help redress the wound once we got the bleeding stopped. Sigh ... so tired of it all. Then, one of my co-workers/friend Carolina, had invited us to go to a healing Mass @ ST. Phillips! Carolina had really been supportive and I was very impressed @ how much she went out of her way to talk to me about God and prayer, so I felt I wanted to go to that healing Mass! Since that Mass - I have not had any bleeds! If I have had any, I don't remember and if I did, it was because I picked an area trying to get some scab off! Meanwhile, I had pretty much just given in and decided to get that darned trache! I felt that if Dr. Yakes in Denver wanted me to have that done - then my fate was in Gods hands and I would not be fearful anymore!

So I started trying to get things ready to set up getting the trache surgery. Didn't know where to start, so I called Dr. Yakes office. Was told to call Dr. Reed - since he is the Head of Voice and Swallow in CO! I bugged them a couple of times and it took him a week to get back to me. Dr. Reed really discouraged me to have the trache saying it was definitely risky! First, I would have to have it in TX, as my insurance wouldn't pay for a trache in CO. Then of course, it would take a team of doctors in a specialized hospital to do this. My worry was always that big vein in front of my neck. At one time I had asked Dr. Yakes nurse, Julie LaBadie whether that area was avm - and she had replied with, "I don't think it is". I remember thinking, "WHAT? How could it NOT be"? So I mentioned this to Dr. Reed and he said something to the effect of sometimes "secretions" from the avm affect vessels nearby and enlarging them - so I'm guessing that once that area is embolized, those vessels affected should diminish in size, right? Dr. Reeds worry for me was not only getting the trache in, but mostly maintaining it w/out having problems! He felt that I would possibly have problems and then of course no one nearby that really knew what to do to help! So! His suggestion was to discourage me from the trache - to keep working with the Therabite! Said he was going to be @ a workshop w/a doctor in a week that worked w/the Therabite extensively, and would talk to him about giving me some tips and pointers! Dr. Reed went on to say that we would touch base in a month and see how I felt @ that point about flying in to CO and having a procedure, according to how well the Therabite was working out! Meanwhile of course, we worry about not letting the avm getting ahead of us, we want to keep ahead of it! My last embolization was in early May!

That's where I'm @ folks! Mark has been doing an awesome job on my wound care! That area has been healing finally! We kinda needed to get a break from embos to give my face a chance to heal! Speaking of Mark - he's riding the celebrity wave right now! He works for the City of Corpus Christi and has been in charge of giving tours of the coliseum for businessmen interested, or the insurance adjustor(s). Mark was on TV and in the newspaper - then we recently got some much needed rain and the News crews were out interviewing people whose job was affected by the rain. Guess who they interviewed? So, Mark was on TV again!

I've been keeping busy planning my baby Hanz's birthday party! He should be a year old soon, so we want to make it a big, fun event! Stay tuned to my blog for details and photos! I must close now, as I am drifting off to sleep! Thank you all so much for caring enough to check up on me and for your continued prayer! As always, you are on this journey with me and I couldn't do this on my own!

Oh! I'm including a couple of photos of myself with my little angel Hanz!